Friday, August 9, 2013



In reading various posts online, primarily from newer parents, I felt that I needed to put things in perspective.  There is never going to be a one-size-fits-all 'cure' for hydrocephalus, simply because there are many causes.  Prevention is the best 'cure' out there, avoiding the condition all together, but that isn't realistic.

To say that there hasn't been any new development in shunts is simply not true.  When I was shunted in 1961, there had been a lot of progress made over the previous decade or so.  What was state of the art then is primitive by today's standards.  There was a lot, certainly not enough, research and development that went into improving shunts over the last fifty years.  Today there are many types of shunts, including programmables, that vastly improve the lives of those of us living with hydrocephalus.  Note:  We aren't suffering with hydrocephalus, we are living with it.  It is also a condition, not a disease.

While the statistics may be accurate, that sixty percent of us will always have some degree of dependance on others, that dismisses the forty percent that ARE independant and productive members of society.  Even those on full disability from the government can still be living productive lives, whether that is volunteering in their communities or working a few hours a week for money, if they are able.

We aren't just sitting around, waiting for death to overtake us.  A diagnosis of hydrocephalus isn't a death sentence.  It shouldn't be seen as such.  My mother was told by doctors to turn me over to the state, to be warehoused and it was 'suggested' that she forget all about me because I was going to be a vegetable and dead by the age of 13.  I'm about to turn 52 in a few days.  I never attended a 'special school', I went to regular, public school from K-12 and went to college.  I majored in culinary arts, so their prediction of me never being able to feed myself was proven untrue, along with a lot of other 'definite ideas' from the early 60's.

I certainly understand and appreciate parents' concerns about their children and the type of life they will lead, but that is true for every parent.  No child totally lives up to the expectations their parents had for them when they were born.

I'm not against research, in general.  I want to know as much as possible about my hydrocephalus, just as many of us do.  What I don't need is to be 'fixed' or underappreciated for what I have to offer because of some myths that persist about my condition.  I've met quite a few others, in my age group, who have had periods of time where their hydrocephalus was 'arrested'.  That doesn't mean it doesn't exist, only that it isn't active.  Mine has been 'arrested' for almost 30 years.  But it could become active again an hour from now, or never.  I have been without a shunt, which is rare, for over 30 years.  That too could change, but it doesn't dictate how I live my life.  My family and I focus on what I CAN do, rather than what I can't.

Today's new parents to hydrocephalus have access to lots of information, support groups and a much more accessible medical profession than my mother did in 1961.  She was told that she would be forbidden to see me in the hospital if she insisted on going to the medical library and finding out as much as she could.  She was also told that she shouldn't visit me in the hospital because when she left I would cry.  Thank goodness I did something NORMAL!  She was also told that she shouldn't touch or hold any of the other babies in the nursery.  Today, hospitals can't get enough volunteers to hold sick babies!!

We have people living productive lives in our group, who have been living with hydro for over 50 yrs.  We also have parents and family members who have been around us throughout our lives.  It is a challenge to live with hydro, but it is also a blessing rather than a curse.  It is scary for those who are new to it and sometimes it is scary for us as well, but it is definitely worth the fight to live.

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